• Inflammatory Breast Cancer - Treatment and Surgery

    Asked by DYTYBR on Monday, November 5, 2012

    Inflammatory Breast Cancer - Treatment and Surgery

    I was diagnosed July 2012 with IBC. I am currently undergoing chemo treatment. 4 rounds of AC every 2 weeks done and now am on my 6th out of 12 of Taxol. I will have a month break after completion of 12 rounds of Taxol and then surgery (double mastectomy with reconstruction) in January. Radiation to follow surgery. My understanding is that this is pretty standard protocol for IBC? I am concerned about the one month break and any little free floating cancer cells still. Would love to hear from any other IBC ...with experience and other considerations. Thanks!

    11 Answers from the Community

    11 answers
    • ticklingcancer's Avatar
      ticklingcancer

      Did they mention doing a PET scan before continuing treatment? If so, that may be why they're waiting a month. My Oncologist told me if he did the scan too close to my last round of chemo it would look like I have cancer all over my body. If you're concerned, you should definitely speak with your Dr.

      over 4 years ago
    • nancyjac's Avatar
      nancyjac

      There really is not one single standard protocol. I had IBC. 6 rounds (every 3 weeks) of TCH, followed by bilateral mastectomy (no recon), rads, and AI. The time between chemo and surgery isn't really a break for you. The infusion from you last chemo is still killing cells for at least 2 weeks after it is administered, so mastectomy surgery prior to that would be self defeating. You also need some time for you white blood cells and platelets to rebound after your last chemo or you are a higher risk for infection any blood loss from your surgery. You will also probably be getting some additional test (CT or MRI) for the benefit of the surgeon to know how deep and wide the need to cut. This is especially critical for IBC where tumors are not well differentiated and there is skin involvement. Also, if you are getting immediate recon, there is a lot of coordination and scheduling that has to go on between surgeon, plastic surgeon, and hospital stall. My last chemo was some time in March (forget the exact day) and my mastectomy (without recon) was Apr 10.

      over 4 years ago
    • Carol-Charlie's Avatar
      Carol-Charlie

      I do believe Nancy is correct on the one month break before having your surgery. I had different cancer (Ovarian Stage IV) had the debulking surgery, then almost two years of chemo. PET CT Scan show me Cancer Free for the Last almost 7 years. BUT.. after the chemo I wanted to have my knees replaced. (Actually they were bone on bone and I needed them replaced) The oncologist had me wait two months. The knee doctor agreed. I had them both replaced six weeks apart... If I'm going to live... I'm going to walk. This was a good decision... oops I wandered off your question. I too wondered about that one little cell..

      over 4 years ago
    • princess123's Avatar
      princess123

      I have Inflamatory Breast cancer, however, it has spread to far for me to have surgery. I am currently on chemo break for the last 2 months. I have blood work done every 3 weeks to check my cancer markers and so far everything is staying the same. Hope this helps a little.

      over 4 years ago
    • raven's Avatar
      raven

      I was diagnosed with Inflammatory Breast Cancer, went through chemo and waited a month before surgery. I was determined to have bilateral, but my none of my doctors supported that. Finally my surgeon said that if I got an infection radiation would be delayed, effecting final outcome, and that the larger surgical area would increase that possibility. I opted for unilateral. After completing radiation my radiologist told me that, while there is no scientific documentation to support this, it is her opinion based on observation of her IBC patients, that women that have bilateral mastectomies seem to metastasize in the chest wall of the non-involved side more frequently then those that have unilaterals. I bring this up not to cause conflict for you, but I wished I had that information to help me make my decisions. Best wishes.

      over 4 years ago
    • nancyjac's Avatar
      nancyjac

      Raven, that is sort of the flip side of the same coin. Obviously if you have your breast removed (on either side) the likelihood of metastasis to the chest wall rather than the breast is going to be 100% greater since there is no breast. However, that doesn't change the likelihood of metastasis, just it's location. Statistically, breast cancer is most likely to metastasize to the bones, lungs, or liver whether you still have breasts or not.

      over 4 years ago
    • polgara's Avatar
      polgara

      I also have IBC and my surgeon said I have a three werk window after my last treatment for my bilateral mastectomy. It is true that the chemo is still working well after your treatment and I have the same treatment plan as you. I am can not have recon until six months have passed from my last treatment. Also the treatment plan we are on is to specifically get any floati g cancer in our bodies. Have you added tumeric to your diet at all, its a potent anticancer spice.

      over 4 years ago
    • DYTYBR's Avatar
      DYTYBR

      Thank you all...the surgeon mentioned at my last visit that she will order a pet scan again when I see her so I will see if it's before or after treatment completed. I meet with the radiology oncologist as well this month and will be sure to ask the question about risks of infection and delay of radiation. I feel better hearing from your responses that a break isn't so bad and the chemo is still working on those cells! Oh and I just attended a workshop with a nutrionist and she gave us each a spice jar of turmeric!

      over 4 years ago
    • MarnieC's Avatar
      MarnieC

      DYTYBR - do you know about the Inflammatory Breast Cancer Foundation? I ran across them while researching an article for my website and have been in contact with them. They are a very helpful resource. Their web address is http://eraceibc.com .

      over 4 years ago
    • Sandy143's Avatar
      Sandy143

      DYTYBR, I always follwed my oncologists treatment plan but I always asked questions and ask for why I was getting a particular treatment. Talk to your treatment team, doctors and nurses. I agree with nancyjac that everyone is different and not all protocols will apply to everyone.

      I would like to offer a bit of my experience to give you some encouragement. I was 52 and diagnosed in April 2002 with 4th stage IBC and a second type of cancer (IDC) with a tumor. The tumor is what saved my life...it got me to the doctor. I had gone 8 to 10 years misdiagnosed by the time a really good doctor gave me the diagnosis. I was given a "terminal" diagnosis and was not expected to live more than a few months because of the extent of the disease. I've had two radical surgeries, 8 1/2 years of chemotherapy and followed by a total of 33 weeks (16 weeks, 12 weeks, 5 weeks). All my doctors treated me with maximum dose chemo and max dose radiation. I am disfigured. There was no reconstruction possible because of damage by surgery, and radiation burns. I have been through a lot and I hope no one ever has to go through what I have. But, I am here to say I just celebrated my 10th year anniversary of diagnosis April 2012. My doctors call me a miracle and no one knows why I am alive. I jokingly tell people, "heaven isn't ready and the devil doesn't want me." I am now permanently disabled so I can't work. But I have been asked to share my story to give others encouragement. I have an article in the most recent Chicken Soup for the Soul: Hope and Healing for your Breast Cancer Journey (page 64 "Sandy's Account). It is only one of many I hope to share with others. There is so much I wished I knew when I was first diagnosed I have suffered so much and often needlessly. I've done a lot of research and hope to organize it someday. I'm always willing to share the information, good advice and of course encouragement and support. There is a lot of help for cancer patients but you have to know where to look.

      Also, never hesitate to get a second, third or fourth opinion. Look for IBC experts in your area. Believe me not all oncologist are the same. I hope this wasn't too much feedback for a simple question. I'll include you in my daily prayers. Feel free to contact me if you want to talk.
      Sandy143

      over 4 years ago
    • DYTYBR's Avatar
      DYTYBR

      Sandy,
      Thanks for sharing your story! Your story is both encouraging and inspiring. I have been trying to find survivors through ACS beyond the 5 year mark and while I got 2 return calls neither were IBC Dx. I realize everyone's BC is individual but I needed to know you were out there! I am so sorry it's been such a hard road for you. Congrats on your 10 years! Continued blessings! I have to share my name is Sandy also! I would love to chat with you and just learned how to reach out to you! Sandy

      over 4 years ago

    Help the community by answering this question:

    Create an account to post your answer Already have an account? Sign in!

    By using WhatNext, you agree to our User Agreement, and Privacy Policy


    Read and answer more inflammatory breast cancer questions.  Also, don't forget to check out our Inflammatory Breast Cancer page.